How Genetic Discrimination Works

Is it any worse for insurers to find out consumers' genetic information than it is for them to know your cancer, smoking or heart disease status?

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The late Sen. Ted Kennedy, one of the sponsors of GINA, called the bill "the first civil rights bill of the new century of the life sciences" [source: Wadman]. This points to the importance of genetic discrimination, but does GINA go far enough? After all, while employers and health insurers can't use genetic information, a large and important loophole allows insurance companies that provide life, disability and long-term care plans to do so. Should they be able to?

On the one hand, insurers measure a whole range of risk factors when calculating your premium for, say, life insurance. Do you smoke? How much do you weigh? Did any of your relatives die of cancer? That last question already provides a form of genetic information, and it's perfectly legal for insurers to ask it — so why shouldn't they be able to find out whether you have the genetic markers that indicate you're at a high risk of contracting something lethal?

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Huntington's disease is the classic example. A neurodegenerative disorder, Huntington's is inherited. It might be rare in the general population, but children of people with the disease have a 50 percent chance of getting it. So if you have a parent with Huntington's, your life insurance premium is going to be through the roof — if, that is, you can even find somebody who will cover you. That sounds like genetic discrimination, but insurance companies argue that if they don't charge appropriate premiums to high-risk individuals, they'll be forced to raise premiums for everybody else.

However, inherited genetic disorders like Huntington's or breast cancer via the BRCA 2 gene are extremely rare. So rare, in fact, that insurers in countries like the U.K. have agreed to ignore the results of genetic tests when calculating premiums [source: Macdonald]. This could be thanks to the fact that Europeans have been thinking about, and legislating against, genetic discrimination since as early as 1990 [source: Hoyweghen and Horstman].

Insurers, of course, would rather not see more laws barring their access to information. Some even argue that the more information they have, the more people they can insure. In the past, for instance, somebody who survived a heart attack might not have been able get life insurance. Now, thanks to medical research and advances, their likelihood of getting a policy has improved [source: Hausman].

And what happens if insurers are banned from accessing genetic information? What if more and more people get their DNA tested and more and more of us discover we're at an increased risk of developing a fatal disease? That might motivate more and more of us to buy life insurance, which could, in turn, unbalance the pool of clients, resulting in too many claims for companies to handle [source: Collins].